It seemed to me that a prophecy from on high was in the process of fulfilling itself. Pretoria sent down an instruction saying nurses were not up to the task of treating AIDS. They were taken off the job, and it was not long before their managers told themselves that they were indeed not up to the work, that they never had been. And so, almost overnight, Lusikisiki threatened to fall backward through time and settle once again into the first quarter of 2003, when nurses were indeed incapable of treating AIDS. I wondered whether it was possible that the reservoirs of self-belief in this place were really that shallow. An image came to me of the Lusikisiki ARV program as a giant hot-air balloon, its furnace coaxed and fed and nurtured until the colossus finally took to the air, only for a pinprick to penetrate its fragile skin and bring it down to the ground.
THE ASSISTANT PHARMACISTS and adherence counselors I spoke to were despondent. They told one gloomy story after another. An adherence counselor had been forced to surrender the room he had always used to prepare patients for treatment. “This is a government clinic,” he was apparently told, “and you are not a government employee. We don’t have space for you.”
The previous week, I was told, a patient arrived at a clinic near town a week before she was due to receive her new batch of ARVs. She did so because she was suffering from chronic headaches. The nurse who received her warned that if she ever came to the clinic again outside her monthly appointment, she would be taken off ARVs and left to get sick and die.
And, to complete the picture, another horror story, also from one of the MSF-trained laypeople. When she arrived at work the Monday morning after Hermann left, she said, the nurse at her clinic took her aside and had a quiet word in her ear.
“I have been waiting to tell you this for a long time,” the nurse reportedly said. “And now that your Dr. Hermann is gone, my tongue is free. You are not welcome in this clinic. You have toyi-toyi [a militant dance crowds performed during the uprisings against apartheid] on the mind. You are here only to make trouble. And you have been influenced by that white man. He was a bad influence. He was pushing black people to work like slaves. I am nobody’s slave.”
I did not doubt that any of these stories were true. But I wondered about the tone and the spirit in which they were uttered. The young laypeople Hermann Reuter had trained in Lusikisiki were perhaps his finest accomplishment. Meeting them one after the other, I was struck by how well he had chosen: each of them ingenious and clever, each overflowing with will. Before they met him, their futures had been deeply uncertain. They lived in a place with few jobs, and they were not sufficiently educated to find good work in South Africa’s cities. Hermann had changed their lives. He had lent them his powerful moral purpose, and had trained them in invaluable skills. Above all, he had shown them the art of the possible; it was their collective agency that had resurrected their district’s health-care system, and they knew it.
But listening to them now, I began to wonder. Many referred to Hermann, from time to time, as the father of Lusikisiki’s treatment program, and it seemed now that they were not so much agents of the possible as abandoned children. Perhaps, I thought, they had taken nothing from Hermann after all; perhaps they had only borrowed. With him gone, they were once again the sons and daughters of Transkei peasants, fated forever to be on history’s receiving end. They were the Israelites wandering the Sinai, their Moses lost to them.
Perhaps that is unfair, I thought. Hermann has only been gone two months. They are in shock. When I return next year, they will have found their feet once more. But as things stood, the story they conjured rendered them helpless bystanders in the face of an immovable drama. The image they painted of the health system was that of a wretched monster. Hermann had force-fed it an ARV program, and it had churned the thing around in its great mouth while he was there to watch. The moment he turned his back, it spat his food out.
And each nurse, in this story, was a monster writ small, a personification of the beast itself. It seemed to me, as I drove away from Lusikisiki, that from the district officials to the adherence counselors, each had her own story of the program’s decline, and the nurses were the demon of every tale. They had become the repositories of everybody’s sense of failure.
I STAYED AWAY from Lusikisiki for a full six weeks, speaking to few people there, save Sizwe, for whom the fate of the program was a matter of concern somewhere on the periphery of his life.
I returned in the first week of February. It was apparent from the moment of my arrival that something was different. My first meeting was with Bavuyise Vimbani, the head of the new organization of adherence counselors. There was a lightness in his step as he moved about his office, a palpable sense of relief in his voice.
“What is it?” I asked.
He smiled at me quietly over the top of his monitor. “I’ve just calculated January’s uptake figures,” he said. “Between the hospital and the clinics, we put more than a hundred new people on ARVs.”
“How?”
“Ah,” he sighed. “That is a long story.”
It is also a story that is difficult for me to tell. For it involves a range of people across Lusikisiki’s health system breaking innumerable rules. In my last interview with Hermann before he left, I asked him what would have to happen, at a minimum, for the program to keep flourishing after MSF’s departure.
“Nurses need to find ways to quietly keep doing what they did before the order came for them to stop initiating,” he replied. “They need to cheat. No, cheat is the wrong word, but nurses need to find a way to get their folders to doctors to sign for them. Nurses don’t want people to die, and they see that if ARVs aren’t initiated, people die.
“Whether they will be allowed to cheat depends on the district management. If our district management has enough backbone and says we will find proxy ways of people initiating treatment, I don’t foresee a problem. If they start acting as a policeman and start threatening nurses and demotivating nurses, and saying you are not allowed to do it, you don’t have a doctor anymore, you must stop, there will be big problems.”
I do not know whether district management turned a blind eye, or whether they just didn’t know; they denied it vociferously when I tentatively raised it. But by January 2007 a system of small-scale cheating had instituted itself in pockets across the district. It always emerged from particular relationships between individuals. Doctor X, who saw clinic patients every week, would develop an understanding with Nurse Y. In the straightforward cases, the ones she’d been handling with confidence since the beginning of the program, she’d give the doctor the folder, not the patient. When confronted with cases that stretched her, the sort of cases she once referred to Hermann, she would send both folder and patient to the doctor.
And so a host of invisible pathways opened up between the clinics never visited by a doctor and the clinics the doctors staffed every week. Sometimes these pathways conveyed folders, sometimes patients; the logic of the system was fluid, established and reestablished by relays of trial and error.
Often, though, the initiator of the new relationship was neither the doctor nor the nurse, but one of the laypeople. “I went to the head nurse,” an adherence counselor told me, “and I said you either get these folders to Doctor X or we throw the folders away because the people they belong to will soon be dead. Do it. Doctor X is a good man. He does not want people to die, either.”
When I had visited before Christmas, I saw now, I had come to a place in a state of shock. The shock was receding. In the sobriety of the new year, people were feeling their agency return to them, they were beginning to act.
It was, in a sense, the most gratifying of my trips to Lusikisiki, and the more I learned, the more curious I became. I wanted to know more about how these informal networks of understanding worked, who knew, who didn’t know, who didn’t want to know. But few people were prepared to say much. I was here to write things down, and this was about rule breaking; I was not the sort of person with whom a prudent
rule breaker is candid.
I should not exaggerate. The program’s future remained fragile, its present a far cry from perfect: awful stories still abounded. There is, for instance, a particularly remote clinic, some twenty-five miles from town, its roads in poor condition, its surrounding population dirt-poor, even by the district’s standards. On the day in January its batch of ARVs were meant to travel, there was heavy rain, and the district’s transportation department refused to use any of its vehicles. Three months earlier, MSF would have averted the problem. They would have taken the drugs in one of their vehicles, or hired one, or made another plan, but ARVs would never, ever be delivered late: they were sacrosanct.
When the head nurse at the clinic responsible for dispatching the drugs heard the news, she shrugged and went back to work.
“We must make a plan,” an adherence counselor told her.
“The patients can make a plan,” she replied. “They can come to town to collect their pills.”
“They are too poor to come to town. They can’t afford it.”
“And what do they think is more expensive,” the nurse retorted sharply, “a trip to town, or a funeral?”
And so the vehicle never left town, and a batch of ARV users out in the sticks defaulted on their treatment.
There were other awful stories. Clinics would not pay attention to their inventories and thus fail to order new stock in time, sometimes leaving gravely ill patients without drugs. Or a pharmacist would notice that nurses were not increasing the dosages of drugs when their patients gained weight, rendering their drug intake dangerously out of kilter. When she raised the alarm, she was told to mind her own business. The system had lost its center of authority, it was clearly suffering for it, and the price would be paid in ill health, in death, and, no doubt, in the emergence of drug resistance among some of Lusikisiki’s ARV users.
Nor was the future of the program certain. An American NGO, University Research Corporation, had just arrived in town to fill some of the gaps left by MSF’s departure. They were to pay the salaries of two pharmacist assistants and two senior nurses. The nurses were to form mobile units, supervising and supporting their colleagues’ work at clinics across the district. The two doctor’s posts were being advertised again, and the new NGO was to subsidize their salaries to make them equivalent to Grade 11, thus keeping incumbents in their jobs. The clinics would soon stop borrowing doctors from the hospital.
In eighteen months or so, University Research Corporation would pull out, too. Like MSF, its task was to facilitate the building of a sustainable health-care service, rather than become a crutch for an inadequate service—and it was impossible to say whether the district would have sufficient budget by then to fill the gaps they left. So it could be that fatal systemic weaknesses were merely being masked for a while.
Nonetheless, the spirit that began trickling through the system in January 2007 without doubt represented a moment of redemption. If the clinics had indeed spat out the ARV program as a foreign, undigestible object, the only tale to tell would have been macabre beyond the saying of it. It would have been the story of an institution and its people so lacking in self-belief as to be unable to maintain a lifesaving machinery. It would have been a tale of collective resignation in the face of mass death, the protagonists telling uglier and uglier stories about one another as they stewed in their sense of failure. Instead, a myriad scattered people were coming together quite organically in a quest to give the gravely ill the medicine that was their rightful due.
WHEN I RETURNED to Johannesburg, I was tempted to write to Hermann in Addis Ababa to give him the news of the January figures. I resisted the impulse. Nobody in Lusikisiki had heard from him since his departure the previous October. I do not know whether he had found a discreet channel of information, but he had clearly deemed it best, both for himself and the program, to absent himself entirely. If he wanted news, he knew where to find it.
As time passed, my perspective on his work shifted a little. I had kept my head down and told a narrow story, the tale of one ARV program in one rural town. As I write now, in February 2007, more than a quarter of a million people have started ARV treatment at public health-care institutions in South Africa. That is hundreds and thousands of people short of the target, a shortfall measured in death on an unspeakable scale. But it nonetheless represents a great deal of work. I have told a story about 2,200 ARV users. Where does their story fit in with the other two hundred fifty thousand? In the absence of any clarity of purpose from the central government, in the context of failing drug supplies, chronic nurse shortages, and local managers congenitally incapable of self-assertion, who put a quarter of a million people on ARVs?
In late 2005, when around eighty thousand people were on treatment at South African government facilities, the public health systems scholar Helen Schneider wrote a paper that asked similar questions. She noted that growth in the numbers of people on ARV treatment was unevenly distributed across government-accredited ARV sites. The areas doing well were those where “HIV care initiatives had existed prior to the start of the formal rollout. These sites emerged spontaneously across the country in response to falling drug prices from 2001 onwards.”
In other words, where people were getting drugs it was in spite of national government; it was because the hope inspired by the availability of treatment had quite spontaneously given birth to pockets of will across the country. Sometimes it was large, rich NGOs that went to work, sometimes local community-based organizations with a few cents to rub together, sometimes just a charismatic manager in the government health system itself. But every case was animated by local people mustering ingenuity. By force of will, people learned to cheat a little, as Hermann put it, learning which corners of the health system were dead and useless and thus ought to be skirted, which corners were alive and ought to be milked for all they were worth.
The MSF program in Lusikisiki is perhaps best understood as just one of these innumerable instances of localized will. It took the form of a famous NGO, a charismatic project leader with a budget to pay three dozen salaries, a voice loud enough to attract people like me to come to write and record. Most of the other instances are quieter, more modest, less successful. But together they represent two hundred fifty thousand people and counting.
In a remote place in the Transkei called Madwaleni, I met a doctor and a lawyer, Richard Cooke and Lynne Wilkinson, who left their lives in Cape Town and took up government jobs at a forlorn district hospital. When they arrived, it had five doctors on its staff, a quarter of a million people in its catchment area. Within two years they had an ARV treatment program up and running, not only at the hospital, but also at surrounding clinics. When I met them, their program had put six hundred people on ARVs. They had little outside money, just a massive quotient of determination and ingenuity.
Perhaps, in the end, that was Hermann’s gift to Lusikisiki. After MSF had gone, what was left was a network of people who had come to see, through the potency of their own deeds, that the horizon of the possible stretched further than they had ever imagined.
MSF’S PROJECT IN South Africa was to show the government that universal ARV treatment is most likely to be achieved when the service is as decentralized as it possibly can be; when treatment is available at each of the country’s roughly three thousand clinics; and that one does not need a doctor at every one of these sites, nor even a nurse, to succeed.
Hermann Reuter believed that the government would eventually offer a universal service under the force of popular pressure.
“All these people on drugs,” he told me, “their relatives all see that their lives have been saved, the word spreads. Soon millions of people know. They start coming for treatment. The hospitals are too full so government starts using the clinics under the sheer force of the pressure. One day the drugs are in every clinic in the country.”
I was not so sure. What I saw in Nomvalo and Ithanga told me that the mass, unequivocal embrace of the drug
s Hermann envisions would never come, that by its very nature, a mass outbreak of dying does not yield crispness of action, still less unalloyed solidarity. My time with Sizwe had shown me that in spades.
And yet a few months after Hermann left Lusikisiki, the prospects for his prophecy unexpectedly rose. South Africa’s health minister, the living symbol of the government’s ambivalence toward antiretroviral medicine, fell very ill. As she lay in the intensive care unit of a private hospital, her deputy secretly met with Zackie Achmat, the pioneer of the South African social movement that had arisen to demand AIDS treatment. President Thabo Mbeki, embroiled in and weakened by a bitter succession race for the leadership of his party, remained silent. A momentous change was quietly slipping in under the radar. In March 2007, the government announced a new plan to combat HIV/AIDS. Among its goals was to bring treatment to three-quarters of those who need it, by 2011. By then, the plan envisaged, 70 percent of people beginning treatment would do so with nurses in clinics, not doctors in hospitals.
I read these words in a newspaper report at dawn on a February morning in my apartment in Johannesburg. I rubbed the sleep from my eyes and read the words again. Nurse-led treatment at clinics: what MSF had fought and scrapped and screamed for now stood casually on the page of a health department press statement, as if it were the most natural idea in the world. That it was now in the heartland of government policy was a direct result of MSF’s Lusikisiki project.
And so, finally, very late in the day, MSF’s view of matters was reflected in the South African government’s most important policy document on the epidemic. Whether this commitment would be momentary or lasting was an open question. So too was whether the country’s health-care system would prove capable of delivering the service envisioned in the policy document. And whether Sizwe and thousands like him across the country would come forward to test—that was also an open question.
Sizwe's Test: A Young Man's Journey Through Africa's AIDS Epidemic Page 31
